2021-02-22-accounts

REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

REPORT OF THE TRUSTEES AND

UNAUDITIED FINANCIAL STATEMENTS FOR THE

YEAR ENDED 22[ND] FEBRUARY 2021

FOR

RARE AUTOINFLAMMATORY CONDITIONS COMMUNITY – UK (RACC-UK)

FLAT 1, 24 SWAN STREET EYNSHAM, WITNEY, WEST OXFORDSHIRE

OX29 4HU

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

CONTENTS OF THE FINANCIAL STATEMENTS

FOR THE YEAR ENDED 22[ND] FEBRUARY 2021

	Page
Report of the Trustees	3 - 12
Statement of Financial Activities	13
Notes to the Financial Statements	14 - 15

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

REPORT OF THE TRUSTEES FOR THE YEAR ENDED 22[ND] FEBRUARY 2021

Trustees are the people responsible for controlling the work, management, and administration of the charity on behalf of its beneficiaries. Generally, trustees are treasurer, chair, board member etc. The trustees have adopted the provisions of Accounting and Reporting by Charities: Statement of Recommended Practice applicable to charities preparing their accounts in accordance with the Financial Reporting Standard applicable in the UK and Republic of Ireland (FRS 102) (effective 1 January 2019)

OBJECTIVES AND ACTIVITITES

Objectives and aims: To relieve the needs of patients, families and carers affected by Autoinflammatory conditions in the UK by:

(a) Providing information, support, and advice.

(b) Raising awareness of Autoinflammatory conditions.

(c) Providing data when supporting research in relation to Autoinflammatory conditions.

Significant activities: There are approximately 26 Autoinflammatory conditions that are rare and genetic identified as errors of the innate immune system. Due to the rarity and complexity of the conditions, they are often overlooked by doctors, researchers, and the public. Symptoms are like those of Autoimmune conditions involving the adaptive immune system and the only way to diagnose Autoinflammatory conditions is through Genetic testing.

Public benefit: Nothing in this constitution shall authorise an application of the property of the CIO for the purposes which are not charitable in accordance with [section 7 of the Charities and Trustee Investment (Scotland) Act 2005] and [section 2 of the Charities Act (Northern Ireland) 2008]

The trustees have complied with Section 17(5) of the Charities Act 2011 and have had due regard to the guidance on the Public Benefit by the Charity Commission when exercising relevant powers and duties.

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

ACHIEVEMENT AND PERFORMANCE

Charitable activities

RACC – UK is led by a Board of Trustees. The work is driven by patients, families, carers, and experienced medical professionals, in the fields of rheumatology, immunology and nephrology. RACC – UK is also represented by Rachel Rimmer as a RIPAG member of the European Reference Network, Rare Primary Immunodeficiency, Autoinflammatory and Autoimmune (RITA) diseases. In addition to this, RACC – UK are registered stakeholders for NHS Clinical Reference Groups relevant to Autoinflammatory conditions.

Patients in the UK with Autoinflammatory conditions have often endured a long delay to diagnosis which impacts on long-term health and quality of life. Autoinflammatory conditions are Rare genetic conditions which often leave patients feeling vulnerable and isolated with little support. RACC – UK believes that no patient should have to suffer on their own.

Today, we care for around 400 patients affected by a range of Autoinflammatory conditions living in the UK, as well as their families and carers. Our services include peer support (group support), 1:1 support, educational support not only of understanding Autoinflammatory conditions but also liaising with schools for school support, liaising with medical professionals, supporting patients on how to navigate the referral processes in the NHS and ensuring they have relevant professionals involved to diagnose and treat their conditions.

Our current services are intermittent, and we realise that having more human resources would be beneficial in helping us to deliver our services to patients, families, and carers. As we grow, it would be beneficial for patients and families to be able to access support more frequently, on an individual basis. This would also provide an opportunity for other organisations to offer support in accessing financial support through the welfare benefits system, sessions on self-care and mental health and wellbeing support. [Organisation Strategy]

Internal and external factors

Rare Autoinflammatory Conditions Community – UK’s board of trustees consisted of direct patient knowledge and experience, educational knowledge and experience, carers knowledge and experience, as well as knowledge of Family law. The skills and knowledge among the board was the main strength in delivering the Charity objectives.

The core team wasn’t stable over the financial year, meaning many projects had to be paused until new trustees were appointed. Moving into the new financial year saw new trustees recruited with a variety of professional backgrounds and experiences which has been the strength of the organisation in its development of a 3-year strategy.

Financial aspects of the organisation remain low and recruitment to cover these areas remains problematic due to the current financial climate, and the COVID – 19 pandemic.

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

Partnerships

External partnerships continue to be essential in helping us to deliver our objectives. Working in collaboration with other organisations not only helps us to raise awareness but strengthens our work and achieve our objectives.

Rare Autoinflammatory Conditions Community – UK became members of the European Reference Network for Rare Immunodeficiency Autoinflammatory, Autoimmune Diseases[1] in 2018, with direct patient representation by one of its trustee’s involvements.

FMF and AID Global Association: To better support our members, RACC - UK is affiliated to the FMF & AID Global Association. Through our partnership, we can raise awareness better. It also enables us to pool resources and benefit from various support programs developed by FMF & AID and their affiliates.

Association of Chairs and the Beacon Programme – Access to virtual training sessions alongside other Chair’s and Vice – Chairs across the UK.

Genetic Alliance UK: Membership approved in November 2019. This will enable us to reach out further to families who may be undiagnosed, as well as future involvement in the AllParty Parliamentary Group for Rare, Undiagnosed and Genetic Conditions.

One of the most beneficial projects delivered by Findacure are the training sessions for patient organisations within the Rare Disease community. The training sessions are not only delivered in house but involve many third parties with a wide range of knowledge and expertise. Attending these events builds confidence in our work, helps to direct our strategies, and strengthen our skill set.

1 - https://ern rita.org/hcps/

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

FINANCIAL REVIEW

Financial position

This first financial year has been challenging, with COVID 19 beginning to restrict our ability to physically take part in fundraising events. Income was generated mainly by the organisation’s involvement third party projects and some donations. The remaining income was received from donations. Although the income remains significantly low and does pose a financial challenge for the next few years, we are confident that our third year shall allow us to increase our income with access to grants and further donations. The balance carried forward shall go towards the core running costs of the organisation.

Principal funding resources

The principal funding source in this financial year was from donations received and a grant from the National Lottery Community Fund as part of the COVID – 19 crisis response schemes.

Reserves

The organisation holds sufficient reserves to cover the core running costs for the next financial year to the sum of 0. Due to the organisation’s size and current financial climate due the pandemic, there is no reserves policy to date. This will be introduced in the next financial year.

Going concern

There are sufficient funds to cover the core costs for the next financial year and the trustees remain confident that the organisation’s income shall increase to support its future projects. However, the trustees remain dedicated to generating income from grants and fundraising, despite the current climate and pandemic.

FUTURE PLANS

The organisation’s main aim for 2021 is to generate income to support the development of educational materials for patients and families. This will be delivered through the care plan pathway, alongside patient experts influencing the work, and the direct involvement of the Medical and Scientific Advisory Board.

The organisation will also expand its own board of trustees, bringing in further skills and knowledge to better support the delivery of its objectives.

2021 will see us responding to the COVID 19 pandemic and prioritising the direct patient support among the patient community both nationally and internationally in collaboration with other Patient Organisations.

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

STRUCTURE, GOVERNANCE AND MANAGEMENT

Governing Document

The Charity is controlled by its governing document, a constitution for Foundation Charitable Incorporated Organisations (CIO) as defined by the Charity Commission in England and Wales.

The Charity’s objects set out in its constitution are:

• (a) Providing information, support, and advice.

(b) Raising awareness of Autoinflammatory conditions.

• (c) Providing data when supporting research in relation to Autoinflammatory conditions.

Charity Constitution

Recruitment and appointment of new trustees:

• (a) There should be not less than 3 nor more than 5 appointed trustees.

• (b) Apart from the first charity trustees, every trustee must be appointed two years by a resolution passed at a properly convened meeting of the charity trustees.

• (c) In selecting individuals for appointment as charity trustees, the charity trustees must have regard to the skills, knowledge and experience needed for the effective administration of the CIO

Trustees cease to hold office if he or she:

• (a) retires by notifying the CIO in writing (but only if enough charity trustees will remain in office when the notice of resignation takes effect to form a quorum for meetings);

• (b) (b) is absent without the permission of the charity trustees from all their meetings held within a period of six months and the trustees resolve that his or her office be vacated;

• (c) (c) dies;

• (d) (d) in the written opinion, given to the company, of a registered medical practitioner treating that person, has become physically or mentally incapable of acting as a director and may remain so for more than three months;

• (e) (e) is disqualified from acting as a charity trustee by virtue of sections 178-180 of the Charities Act 2011 (or any statutory re-enactment or modification of that provision)

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

Organisational Structure

The organisation has three charity trustees as its first trustees who meet regularly to discuss the charity’s activities and impact.

• (1) The members of the CIO shall be its charity trustees for the time being. The only persons eligible to be members of the CIO are its charity trustees. Membership of the CIO cannot be transferred to anyone else.

• (2) Any member and charity trustee who ceases to be a charity trustee automatically ceases to be a member of the CIO

Decision Making

Taking of decisions by charity trustees

Any decision may be taken either: at a meeting of the charity trustees; or

• by resolution in writing [or electronic form] agreed by a majority of all the charity trustees, which may comprise either a single document or several documents containing the text of the resolution in like form to which the majority of all the charity trustees has signified their agreement. Such a resolution shall be effective provided that

• a copy of the proposed resolution has been sent, at or as near as reasonably practicable to the same time, to all the charity trustees; and

• the majority of all of the charity trustees has signified agreement to the resolution in a document or documents which has or have been authenticated by their signature, by a statement of their identity accompanying the document or documents, or in such other manner as the charity trustees have previously resolved, and delivered to the CIO at its principal office or such other place as the trustees may resolve [within 28 days of the circulation date]

Decisions which must be made by the members of the CIO

(1) Any decision to:

(a) amend the constitution of the CIO;

(b) amalgamate the CIO with, or transfer its undertaking to, one or more other CIOs, in accordance with the Charities Act 2011; or wind up or dissolve the CIO (including transferring its business to any other charity) must be made by a resolution of the members of the CIO (rather than a resolution of the charity trustees).

(2) Decisions of the members may be made either: (a) by resolution at a general meeting; or (b) by resolution in writing, in accordance with sub-clause (4) of this clause.

(3) Any decision specified in sub-clause (1) of this clause must be made in accordance with the provisions of clause [28] (amendment of constitution), clause [29] (Voluntary winding up or dissolution), or the provisions of the Charities Act 2011, the General Regulations or the

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

Dissolution Regulations as applicable. Those provisions require the resolution to be agreed by a 75% majority of those members voting at a general meeting or agreed by all members in writing.

(4) Except where a resolution in writing must be agreed by all the members, such a resolution may be agreed by a simple majority of all the members who are entitled to vote on it. Such a resolution shall be effective provided that:

(a) a copy of the proposed resolution has been sent to all the members eligible to vote; and

(b) most members have signified its agreement to the resolution in a document or documents which are received at the principal office within the period of 28 days beginning with the circulation date. The document signifying a member’s agreement must be authenticated by their signature, by a statement of their identity accompanying the document, or in such other manner as the CIO has specified. The resolution in writing may comprise several copies to which one or more members has signified their agreement. Eligibility to vote on the resolution is limited to members who are members of the CIO on the date when the proposal is first circulated.

Induction and training of new trustees

The charity trustees will make available to each new charity trustee, on or before his or her first appointment:

(a) a copy of the current version of this constitution; and

(b) a copy of the CIO’s latest Trustees’ Annual Report and statement of accounts

New trustees will also be expected to carry out basic Safeguarding Children and Safeguarding Adults in line with the organisation’s safeguarding policy.

Key management renumeration

• There are no salaried staff members

• Only core running costs are budgeted predicted on the first 6 months of the organisation’s existence.

Related Parties

NHS England paid the organisation for its involvement of its project. This was based on how many days / hours it took to complete the project under NHS England’s own reimbursement policy.

Risk Management

As governed by Charity Commission in England and Wales, it is the duty of trustees to identify risks and ensure that appropriate and reasonable measures are taken to prevent fraud and mistakes. Trustees compile a register of risks and monitor as such in line with the

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

‘COMPLIANCE TOOLKIT: PROTECTING CHARITIES FROM HARM Chapter 3: Fraud and financial crime – summary’ (2016)[2]

There is also a minimum of two signatories on the Charity Bank account to mitigate fraud and crime.

Furthermore, the organisation remains transparent to its patient community, providing weekly updates of its work and achievements. Moving forward we hope to ensure that set budgets are allocated for specific patient engagement activities, overseen by the organisation’s trustees, in the form of a Patient and Carers Advisory Board.

2 https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/571158/ Chapter3_Summary.pdf

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

REFERENCE AND ADMINISTRATIVE DETAILS

Registered Charity in England and Wales: 1184846

Registered Company Number: CEO18491

Registered Office

Flat 1,

24 Swan Street Eynsham,

Oxfordshire, OX29 4HU

Trustees

Rachel Rimmer Chair Trustee [2019 – 5 Year term] Abdulrahman Adam Trustee / PhD Student [2020 – 3 Year term] Rishi Nursimloo Trustee [2021 – 3 Year term] Chris Higgins Trustee [2021 – 3 Year term]

Independent Examiner

Not Applicable

Solicitors

Not Applicable

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

Bankers

Santander

Bridle Road Liverpool Merseyside L30 4GB

Insurance

Zurich Insurance for Charities – Public Liability Insurance and Trustee Indemnity Insurance

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

STATEMENT OF FINANCIAL ACTIVITIES

(INCORPORATING AN INCOME AND EXPENDITURE ACCOUNT) FOR THE YEAR ENDED 22[ND] FEBRUARY 2021

Income: £5,206.25 Expenditure: £5,129.63 Balance: £906.44 Balance carried over: £906.44

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

4.1 Which reporting requirements apply to all charities which must register with the commission except charitable companies and CIOs?

4.1.1 Charities where the gross income does not exceed £25,000 in the relevant financial year (legal requirement)

Basis of preparation: accounts must be prepared either on the receipts and payments or the accruals basis. If on an accrual’s basis, they must be prepared in accordance with the 2008 Regulations and the SORP. The commission provides packs for non-company charities preparing their accounts on a receipts and payments or accrual accounting basis which are available on GOV.UK. These provide a template to produce accounts in the required form.

External scrutiny: there is no requirement to have the accounts independently examined or audited, unless the charity’s governing document stipulates it, but the commission does have the power to require an audit in exceptional circumstances.

Type of trustees’ annual report: a trustees’ annual report must be prepared (unless excepted from registration) but it may be simplified (see section 7).

Information to be sent to the commission: these charities should not send the commission a copy of their trustees’ annual report and accounts unless it asks for them.

They must, however, file an annual return with the commission online within ten months of the end of their financial year if their yearly income is over £10,000.

If the income is less than £10,000, they can use the annual return form to update their register details, which includes trustee details. The commission sends an annual return notification to the named contact on its records shortly after the end of the charity’s financial year.[3]

3 https://www.gov.uk/government/publications/charity-reporting-and-accounting-the-essentialscc15b/charity-reporting-and-accounting-the-essentials#specific-reporting-requirements-for-different-types-ofcharity

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REGISTERED CHARITY NUMBER IN ENGLAND AND WALES: 1184846 REGISTERED COMPANY NUMBER IN ENGLAND AND WALES: CE018491

This report has been prepared in accordance with The Charities (Accounts and Reports) Regulations 2008

Approved by order of the Board of Trustees on 25th September 2021 and signed on its behalf by:

f

Rachel Rimmer [Chair Trustee]

Abdulrahman Adam [Trustee]

Signature: Abdulrahman Adam (Nov 6, 2021 05:52 GMT) Email: [e-mail]

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Trustee Report 2020 - 2021

Final Audit Report

2021-11-06

Created: 2021-10-25 By: RACC UK ([e-mail]) Status: Signed Transaction ID: CBJCHBCAABAAy2KXBCqxTipHWcSnGzhLc1HHZXjnLL9G

"Trustee Report 2020 - 2021" History

Document created by RACC UK ([e-mail])

2021-10-25 - 3:17:36 PM GMT- IP address: 80.195.168.8

Document emailed to Abdulrahman Adam ([e-mail]) for signature 2021-10-25 - 3:18:13 PM GMT

Email viewed by Abdulrahman Adam ([e-mail])

2021-11-05 - 2:53:26 PM GMT- IP address: 104.47.8.254

Document e-signed by Abdulrahman Adam ([e-mail])

Signature Date: 2021-11-06 - 5:52:06 AM GMT - Time Source: server- IP address: 81.100.210.27

Agreement completed.

2021-11-06 - 5:52:06 AM GMT